LC Access and Affordability Archives

The impact of lung cancer isn’t just physical, it’s also financial. Navigating coverage and out-of-pocket expenses is a minefield for many patients and care partners.

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How Can I Get the Best Lung Cancer Care No Matter Where I Live?

How Can I Get the Best Lung Cancer Care No Matter Where I Live? from Patient Empowerment Network on Vimeo.

How can those living with lung cancer ensure they get quality care even if they live in rural areas? How can lung cancer patients gain confidence in voicing treatment concerns and in communicating with their healthcare team? Watch as Dr. Olugbenga Okusanya shares key points about such vital topics for the lung cancer community.

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Dr. Nicole Rochester: 

Hello and welcome. I’m Dr. Nicole Rochester, your host for today’s Patient Empowerment Network program. Today we’re going to be talking about how long cancer patients can truly get the best care no matter where you and your family live. We’re going to talk about things like how can I remove roadblocks in my care to gain access to state-of-the-art treatment? Will my insurance limit me if I want to get a second opinion? As a care partner, how do I best advocate for my partner, and is a clinical trial right for me? The answers to some of these questions we’ve received revolve around awareness, feeling empowered to ask questions, and connecting to the right resources at the right time. In this program we’ll be learning just that as we meet our guest expert. It is my honor and privilege to be joined by Dr. Olugbenga Okusanya, he is an assistant professor of Thoracic Surgery at Thomas Jefferson University Hospital. Thank you so much for joining us, Dr. Okusanya. 

Dr. Olugbenga Okusanya: 

Absolutely. It’s a pleasure to be here, thank you for having me. 

Dr. Nicole Rochester: 

Now we’re gonna start with talking about some of the barriers to lung cancer care. We know that there are many factors that can negatively impact outcomes for patients and families facing a lung cancer diagnosis, including things like social stigma for smoking, geographic location, socioeconomic status, insurance and access to care, financial hardships, and access to transportation. So, my first question to you, Dr. Okusanya is, what are some of the barriers that both lung cancer patients and their care partners face when they are seeking care? 

Dr. Olugbenga Okusanya: 

First of all, thank you very much for putting a spotlight on lung cancer care, we really need more people to help us treat this really terrible disease. 

There are a number of barriers for our patients in order to get the best care possible. Number one, we actually find at diagnosis, we find that a lot of patients have lung nodules that have been seen because maybe they got a chest x-ray or a CAT scan for some other reason, and maybe they don’t get followed up on because they don’t have a steady source of healthcare, they don’t have a PCP or someone who regularly follows up on their health information. We have trouble also sometimes getting patients in the appropriate diagnostic studies that they need, oftentimes, we find patients that may show up in the hospital that have a significant problem and they may need a special kind of CAT scan or a biopsy, and they simply do not have the resources to get to said CAT scan or get to said biopsy, which is critical in making the appropriate diagnosis so we can get them to the right therapy. One of the biggest things that you mentioned is finding a specialist in terms of all aspects of lung cancer care, whether it is surgery, medical oncology, or radiation oncology, there are medical practitioners that mostly specialize in lung cancer care, and because of that, they’re gonna have access to different resources, they’re gonna think differently about the disease process and they’re gonna approach each patient differently because of the disease process So finding someone who really thinks and works in the lung cancer space all the time, I think it’s a barrier to patients getting really good care. 

We also find that one, cancer care has a lot of hurdles, apart from proper CAT scans, biopsies, work-ups, actual interventions, there are a lot of steps that patients have to go, to get from even just getting a diagnosis to getting treatment and having patients move through that period of time, which is we hope usually four to six weeks in a sort of step-by-step manner can be extremely eliminating. So we really are trying to condense those things so patients can meet all the specialists, they need to get all the tests that they need to get in maybe one or two concise visits and then get into care, and lastly, as you mentioned, not having access to what we call multidisciplinary conferences is a limitation because there are more and more nuanced ways that lung cancer is presenting and being treated, that needs to be discussed between a surgeon and radiation oncologists and the medical oncologists, preferably all in the same setting, all at the same time. So having access to those clinics where we can have a really high-level discussion about the best thing to do for a patient, I feel is a significant barrier, especially for our patients with advanced disease. 

Dr. Nicole Rochester: 

Thank you so much. Wow, you have given us so much to think about and I appreciate your thorough answer. One of the things that I’m struck with as you talk about all of these steps and the fact that ideally, they need to be undergone within a certain time period, of course, it’s time-sensitive. And you mentioned navigating, and certainly, that’s something that I deal with on a regular basis, just the challenges of navigating through each one of those steps can be extremely difficult, you’ve gone through a lot of the barriers that patients and their family caregivers may face. Let’s talk about some of the solutions. Are there a few solutions that you can suggest for overcoming some of these barriers that you just described? 

Dr. Olugbenga Okusanya: 

Yeah, I think from the patient’s perspective, there are a number of things you can do to really help yourself. Number one is a good healthy dose of research, that means getting online, Googling, finding lung cancer experts, preferably in your region, finding out what their interests are, what are the things that they typically research and take care of, and then finding a way to get in contact with them. I think that is really step number one, it’s finding someone who specializes in the disease, and then to find someone that you actually get along, someone who you have a relationship with, a truly therapeutic relationship and invest in that person, and if they’re the right person for you, whether it be personality fit, whether it be background, you will find a relationship with them that will actually help you get through that process. I would also say many programs actually have nurse navigators who are people that help you navigate this process, that is quite literally why they are part of the health system, so if you can find programs and have nurse navigators, they can really be instrumental in setting up appointments that are either overlapped right after one another, all in the same place, things that really help smooth the edges of getting all the work I’ve done at on time. 

And again, I would also recommend the patients, I would try to stack your appointments or stack your visits so that they are not quite so spread out over space and time, because a visit, usually it takes a few days to get a result, which then takes a few days to get a course of action, which then can sometimes provoke another test. 

So, the more times than things are stacked together and information just a get to get in big packets, I think really the better for moving through the process. 

Dr. Nicole Rochester:

I appreciate that. I think what I’m hearing in your answers is really the importance of patients putting themselves in the driver’s seat, which is another thing that I strongly advocate for. I think many patients and family members don’t see that as their role, and they don’t understand and appreciate the value of doing these things that you just talked about, doing your own research and finding providers with whom you connect it’s so incredibly important, especially when it comes to cancer and other serious diseases. So, I want to switch gears a little bit and talk about racial and health disparities, ethnic and health disparities, specifically in lung cancer care. I know that you have done some research in this area, and certainly being a person of color, this is something that I would imagine you relate to, so we know that the CDC and many other healthcare organizations have now declared racism a public health crisis, and certainly in 2021, we continue to see worse outcomes for cancer and many other chronic illnesses in people of color, so I’m curious, what do you think are the notable health disparities that are consistently seen in treating BIPOC patients living with lung cancer? 

Dr. Olugbenga Okusanya: 

Yeah, unfortunately, this is an area of interest of mine. And it turns out that the disparities are literally every single stage. There’s not an aspect of lung cancer care, which there is not a significant disparity that hinders the ability of minority patients to get better care, period at all stages. So overall survival for lung cancer for black patient is worse than white patients, even though black patients get diagnosed on average two to three years younger than their white counterparts. Black patients are less likely to get surgical therapy for early-stage disease, which is the actual care for an early-stage disease dates than black patients, than white patients, that gap has been narrowing over the last 20 years, but it is by no means closed. Black patients are unfortunately less likely to get an appropriate work-up to get the indicated tests. They are also less likely to get the chemotherapy when it is indicated, and they are less likely to be enrolled in clinical trials. So, literally at every step there is a significant inequity that affects black patients, and I think it’s really disheartening to see in a field where lung cancer is the most common killer and cancer, and frankly, there are lots and lots of patients who have options, who have good options that never get investigated and never get delivered. 

Dr. Nicole Rochester: 

That is extremely heartbreaking, and it’s sad to hear that we see the same disparities in lung cancer that we see with every other chronic condition, with every other cancer, certainly what we’ve seen recently with COVID-19 as well, and it really underscores what you said previously, which is the importance of being an advocate for yourself and doing your research and making sure that you really are getting the best care, which could be difficult when you’re struggling with your cancer diagnosis. Sometimes I get angry, I feel like we’re putting so much responsibility and so much burden on the patient. With that said, what are some things that patients of color can do in order to protect themselves from these inequities that you’ve talked about, starting with diagnosis and treatment, what can we do? What can patients of color do? 

Dr. Olugbenga Okusanya: 

So, I think the number one thing is to ask questions, the number one thing is to say, what are my options? What am I dealing with? What should I do or what shouldn’t I do? And to really make sure you get the most at that time when you see a physician, because that is really what we’re there for apart from the surgery, I’m really there to be an educator. I teach as much as I operate on a daily basis whether it be the medical training is whether in my patients, my job is to communicate information back and forth, so you really want to spend the time asking questions and getting as much information out, as much as you can. Number two is, see a specialist. There’s also very good data to indicate that as a black patient, if you see a board-certified thoracic surgeon, you are more likely to get lung cancer surgery than if you were to see a surgeon of unknown specialization, a general surgeon. So clearly the training gives specialist the ability to make finer determinations and discernments that I think in large part favor black and minority patients, so you wanna find someone who deals with these disease processes all the time because they’re gonna look at it in a much higher level and look at it with a lot more granularity. 

Dr. Nicole Rochester: 

Just have to repeat what you said, you said, I teach as much as I operate. That just really resonated with me, and I think that… That’s so incredibly important. Doctor means teacher, right? I think that’s the Latin… We are obligated to teach our patients, so I just really appreciate that that’s something that you incorporate in your daily practice. If we shift gears a little bit and talk about access and some of the concerns about treatment access for lung cancer patients, which you’ve actually alluded to, we know that sometimes these barriers that patients face actually limit their access to treatments, and you indicated surgery as being the mainstay and some difficulties with that, so how can we empower patients so that they don’t feel limited in their care, and how do we make them aware of these treatment options that are available, so that if they are in an office and maybe something’s being offered, but that’s not actually, the standard of care, how do we empower them to get that information and then to act on it? 

Dr. Olugbenga Okusanya: 

Yeah, so number one, which is something I think people do and they don’t realize how valuable it is, bring a friend to the appointment, don’t come by yourself, because you are in an incredibly vulnerable position, you’ve learned or are learning something incredibly emotionally charged and usually very scary. So, you want to bring someone who obviously is gonna love you and care about you, but has enough emotional distance from it that they can be your advocate, they can ask those questions in the room that you may just not be there mentally to ask. Number two, never be afraid to get a second opinion, if you’re lucky enough to live in a populous area with multiple health systems, get a copy of your chart, get a copy of your data, get your disc, make an appointment to see another specialist in another health system and see what they say. Because at the very least, if the information is concordant, then you’re gonna feel pretty good about saying, okay, then I should just go where I think I feel best or who I have the best sort of relationship with. And again, if you are not lucky enough to have that opportunity, I would be very aggressive about seeing if telehealth is an option to reach out to someone who is a specialist, I’ve had not happened to me in the past, I remember I had a woman who telehealth, me from Ohio, because she’d actually read one of my papers about lung cancer, and she sent her scans, uploaded them, I looked at them and I gave her my opinion, and this is the new age or medicine. 

This is where we’re at now. This is a viable option, and even if telehealth isn’t an option, you can always just get on the phone. As a lung cancer specialist, a lot of the information I need can be garnered from test scans and images, so frankly, the physical exam has some role, but is not the mainstay of how a lot of the decisions are made. So even if I see your scans and I talk to you, I can give you an opinion over the phone, it takes me 15-20 minutes, and a lot of times, those visits may not even be charged, depending on who you actually ask to give you an opinion. 

Dr. Nicole Rochester:

Wow. Free of charge. Okay, I see you’re teaching me something that I didn’t know. I’m a huge proponent of second opinions, I’ve talked to so many patients and family caregivers who think that they’re offending their doctor if they ask for a second opinion, so I appreciate that you brought that to the forefront and you deserve to have multiple opinions as you’re making these very important life-changing decisions. So, thank you for sharing that. This is a perfect segue. You mentioned telehealth, and we know that one of the barriers to receiving care, and you’ve indicated that in terms of having access to a multi-disciplinary team, having access to thoracic surgeons as opposed to general surgeons, so we know that that is impacted by where we live, and that often our geographic location can actually be a barrier to the receipt of quality care, so I’d love for you to just talk a little bit about how patients who may be in more remote locations can make sure that they are also receiving appropriate care for their lung cancer. 

Dr. Olugbenga Okusanya: 

Yeah, I think this is a very substantive challenge, I think this is one of the holes in healthcare, there’s these regions in the country where you just are not gonna have access to any number of surgical sub-specialist or radiation oncologist, or lung cancer specific oncologists. I think that is a really big challenge. I think we have actually learned through the pandemic that these physical barriers really are not the reason to not get the best care, so I think those patients should be exquisitely interested in telehealth and in phone calls, and I think most healthcare systems now, because the reimbursements have been approved for telehealth and actually now built infrastructure to support it as an ongoing concept. So now, if you are a patient that’s in Arizona and you want to talk to a doctor who’s in New Jersey, you can do that, you can make that happen. If you find someone, you Google them, you find a friend in that area who know someone, you can call their office and say, I want to have a telehealth visit, and as long as you have broadband internet and a phone, you can do it. You can have that conversation. 

So, I would advocate for people to really make sure that you at least feel like people in the sort of local regional area that you can perhaps get to maybe two, three hours away, but you can imagine a scenario where you can get there, you can try and establish some level of care and some level of rapport with them. I think that’s something that has really opened, has been one of the few good things to come out of the pandemic. 

Dr. Nicole Rochester: 

I was gonna say the exact same thing. That is one… There haven’t been a lot of positive things, but that certainly is one of the positive outcomes of the pandemic, is this surge, and it’s not that we already had the capability, but it certainly was not being used to its maximum capacity. I appreciate that. So, speaking of telemedicine and COVID, think one of the challenges that patients and often care partners have is understanding when is a telemedicine or telehealth visit appropriate versus when do you actually need to go see that doctor in person, so… Can you help clarify that? 

Dr. Olugbenga Okusanya: 

Yeah, so I think in general, even if you start with the telehealth is, I think there’s very little downside to telehealth for almost anyone in general, because a lot of the information can be garnered from the patient record, from their scans. I think in general; it gives you 85% of what you need out of that interaction, and it may be more convenient for the patient, a lot of times it’s actually more convenient for the doctors, doctors have now found ways to work from home. They do have to have their clinic from home, it’s a much more relaxed environment than more efficient. I think there are times like for instance, I have to make decisions about offering surgery to patients who I consider to be moderate or high risk, I think there is a benefit and having that patient come and see me in the office because they have to somehow pass what we call the eyeball test, and that is a little bit of where this disparity comes in in lung cancer surgery, because it depends on who’s eyeball is looking at you, making your determination about what they think is gonna happen with you in surgery. 

I remember… Actually, one of my favorite patients ever. She had data that did not look like she would tolerate surgery, everything about her data did not look favorable. And I saw her, I remember seeing her in person, and you could see the spark in her eye and energy that she had, and I said, you know what, we’re gonna do it. And she did great, she did phenomenally well. And that is a case where if you’re in the population of patients that may be slightly more moderate, slightly more high risk, and you need someone to really look you in the eye and you say, I’m going to do what it takes to get through this. I think that’s the patient where the in-touch, in-person visit really is that extra touch that can be benefited.  

Dr. Nicole Rochester: 

Wow, I love what you said about the spark in her eye and also how you connected that to health disparities, and I don’t know the race or ethnicity of the patient that you’re describing, but we certainly know that that makes a difference, and I just wonder if that had been a different physician, would they have seen that same spark? And I think it just goes back to what we were talking about earlier, and the importance of finding a physician or health care provider with whom you connect, someone that actually respects you, someone that listens to you and see you as a whole person. So, the fact that you were willing to go beyond that data on her chart, which screamed, this is a poor surgical candidate, met her in person, and something about her let you know that she was gonna be okay. 

Dr. Olugbenga Okusanya: 

Agree. And that’s why in medicine and surgery is still art at the end of the day, it’s still an art. You make decisions, best informed decisions, but there’s a lot of it that is still really special and mystical in a way, and I think having that in-person interactions will let you practice that and it’s exactly what you said, you want to have a really nice relationship with the physician, especially anyone that’s gonna be doing anything that might be invasive or dangerous because for the most part, you meet someone for 45 minutes and then you sign up for what could be a life-threatening event. So, you, the physician and the patient should feel really good about that interaction and whatever that energy is, it’s really important, it’s a little bit kind of sacred, I think, and I think it’s really valuable to invest in that if you don’t like the surgeon, you really don’t feel like it’s a good fit or you don’t like your oncologist, find someone else. You’ll do better in the long run, for sure. 

Dr. Nicole Rochester: 

That is so incredibly important. I agree, 100%. So much of healing is beyond just the nuts and bolts of the medical care that we provide, or in your case, the surgical care, there’s so much more to that, that’s not really well studied, but that relationship and that connection is key. 

Dr. Olugbenga Okusanya: 

Critical, and that’s not to say that necessarily the person has to be like the warmest, friendlies, the most fun person you ever met, some people prefer a more yes ma’am, no ma’am, clear cut, well-defined boundaries of a relationship. Some people prefer a big hug and a laugh and a joke, so if you’re getting what you need, that’s exactly what you need, and if you’re not getting what you need, you should think about your other options. 

Dr. Nicole Rochester: 

Love it, love it. Alright, Dr. Okusanya, so we’re gonna talk now about staying on that theme of empowering patients, we know that all of these barriers that we’ve been discussing can impact and limit treatment options, and we know that late diagnoses or not getting the proper care at the outset will lead to more complications and unfortunately, even death in some situations, and as you’ve alluded to, we know that patients who are educated about their illness, patients who take an active role in their medical care receive better care, they have better outcomes. So, what are some key questions that patients and care partners should ask at the very beginning when they are first beginning this journey with lung cancer? 

Dr. Olugbenga Okusanya: 

So, I would say… Question number one that I would ask is like, do you specialize in this? Is something that you do on the regular basis? What percentage of your practice is lung cancer care? You would really like an answer that’s more than 50%, you would like someone who sees lung cancer patients and take care of lung cancer patients as a matter of routine. And something I would also say as a patient, you kind of want your care to be routine, you don’t wanna be someone where things are just being figured out for the first time, you really wanna have someone who does this all the time. The other questions I would ask are, can you tell me what all the options are, not just the one you’re offering to me, I really wanna know what all the options are, and I always tell patients the options are really very broad. A physician chose the option is one, you may wanna not do anything that is an option, you know saying We know it’s there; we understand and we’re gonna watch it or not do anything is a very reasonable option they should tell you about biopsies or surgery or non-invasive therapeutic modalities. 

You really wanna say, I want you to give me the laundry list, all the things that are possible in the institution that I’m sitting in. And then I would also ask, what are the things that you are not considering before that might be options. What are the things that maybe you’ve ruled out in your mind and can you tell me more about that? Because we’re very physician, they’re very good at heuristics, really good at skipping steps and making next logical jobs, so it’s good to ask one of those steps that you skipped in your life and why did you skip them? And then the last thing I would ask is, Is this the kind of case that should be discussed in a multi-disciplinary clinic or conference? Is there anybody else I should talk to about this problem? And I think if you can ask those questions and feel very confident about asking those questions again, most practitioners who are high level and specializing, this will not be offended, they will be glad that you’re asking the question, it will be a relief for both of you. I think if you can ask those questions, you can really help to eliminate some of those ascites and really get on the right trajectory from the beginning. 

Dr. Nicole Rochester: 

Those are such important questions, starting with the first one you provided, which is… Do you specialize in this? I think that we spend a lot of time sometimes betting, other professionals, even hair stylists, or if we wanna get our car fixed, we wanna go to the person that specializes and whatever is wrong with that particular problem, but we don’t always take such care with our most precious commodity, our body. So, I think that’s so incredibly important that we ask that question, and it’s not to make bad comments about those who don’t, but people like yourself have trained for many years, and there’s something to be said about that when this is your area of focus, and this is what you do day in, day out. So, I love that, I also really love what you said about kind of getting inside of the brain of the doctor, because you’re right, we’re skipping steps and we’re going through algorithms, but we don’t often bring the patient into that process, and so I really love the idea of the patients questioning, are there things that you didn’t consider and why? And really having a full understanding of all of those treatment options, and maybe if the doctor has erroneously ruled out one of those possibilities based on maybe an assumption that gives the patient an opportunity to clarify that. 

That is very powerful. 

Dr. Olugbenga Okusanya: 

And I would say, as a patient, oftentimes, we wanna describe very positive feelings towards your physician, it’s a notch a very natural thing to do because you want them to be good, so that eventually you’ll be good and they’ll take good care of you. You wanna ascribe those positive thoughts, and I think that’s very reasonable, but we should approach that with a little bit of question because this is someone who has a lot of information and a lot of knowledge, and you wanna make sure you are getting everything in the middle, so it doesn’t get lost in translation. You wanna make sure you’re there for that conversation. 

Dr. Nicole Rochester: 

Absolutely. What advice do you give to patients that you see so that they can feel empowered Dr. Okusanya? Is there any specific advice that you give when you see patients and things that just helped them to take this active role that you’ve been describing? 

Dr. Olugbenga Okusanya: 

Number one, I tell patients to bring someone with them to their appointments, someone who can stand by as within reason someone who can be there to listen as well, ’cause usually I say, if I tell you 100 things in an appointment which can legitimately have, I could give you 100 unique points of information and in 1 45-minute visit. If you catch 30 of them or 35 of them, you really understand that. I think that’s a lot because they’re very emotionally charged. So, hopefully someone else, it’s with you, maybe catches another 30 or 40, and that gets you to a point where you can really sit down later and understand. I encourage patients to take notes to write things down, and if they want to, to record, to have audio recording of the session, I wouldn’t say anything to you now that I wouldn’t say in a month or in a year, or anywhere else. I’m gonna tell you exactly what I think and I… And if I have uncertainty, I will expose that uncertainty, I will let you know that this is a case that could go either way. And this is a piece of information that I’m looking back and forward between these two options and that really helps the patients later on go back and say, Did I really hear that right? Did I really understand it, right? So that you can feel like you’re getting the best care, and I really think that you have to make sure that you feel comfortable with the provider. 

I think that’s just the number one thing. Are you happy with them? Do you like the way they comported themselves? Did you like the way they spoke to you? Did you like their staff? Also remember, you’re likely gonna be interacting with their staff as much as you interact with the physician, so the other people in the office, the front desk people, the nurse practitioners, the medical assistants, those are the people that you’re gonna spend a lot of time talking to. Did you have a good rapport with them? Also, all that stuff counts to make sure that you’re getting the best experience possible and that you can really be an advocate for yourself. 

Dr. Nicole Rochester: 

That is incredible. Well, it’s just about time for us to wrap up, I just wanna reiterate, you share so many pearls today, but I just wanna reiterate a few of them, and they really resonate with me as a former caregiver and as a health advocate, but that’s the importance of asking questions, the importance of bringing a buddy, and I appreciate that, particularly in your field, when we go into a doctor’s office and the word cancer is stated, everything else goes out of the window, and even in less threatening situations, there’s data that shows that… I think about 20% to 25% of what we say as physicians is actually retained, so certainly when you get a bad diagnosis, that number is even lower, so bringing somebody with you who is not necessarily emotionally detached, but they can literally kind of be the note taker, and they may even pick up on some nuances and things that you may have missed as a patient is so incredibly important. I love that you’ve offered the option of recording, I think that’s also another tool that many patients and family members aren’t aware of, and I think there’s an assumption, and it’s true to some degree that doctors don’t wanna be recorded, but knowing that that is an option. 

The fact that the care that we receive really is impacted by whether or not the person specializes in lung cancer, a thoracic surgeon, and being empowered to ask that question, is this your specialty? How often do you see patients like me and being empowered to ask those questions that ultimately won’t lead to improve care is just so incredibly important, and I think just everything that you’ve shared that really allows the patients and the caregivers to understand just how important their role is you’re the one that’s going to take out the cancer and you’re the one that’s going to get them better, but there’s so many things that happen before that step, before they are on that operating room table that is so important. Do you have any closing thoughts that you’d like to share with us, Dr. Okusanya? 

Dr. Olugbenga Okusanya: 

I think for patients and their advocates, I think it’s really important number that you’re putting together a health care team. You’re putting together a group of people like the avengers. You’re putting together a bunch of people to come together to help you deal with this health problem. You are entering into a therapeutic relationship, so that relationship has to be healthy in order for you to have the best possible outcome, you should feel good about, you know, your doctor is gonna be very skilled, became very knowledgeable, and just like we talked about before. You really wanna find someone who has the heart of a teacher, someone who can sit down and explain it to you in a way that’s gonna be digestible and that is gonna be actionable. So I think if patients and advocates remember that you wanna build a really solid, a really healthy relationship with someone who’s gonna help you take care your health, I think if you do that, you’re going to be in excellent care.  

Dr. Nicole Rochester: 

Awesome. Well, I really enjoyed this time. Thank you so much, Dr. Okusanya, you have given us so much useful information, and I wanna thank all of you again for tuning into the Patient Empowerment Network program.  

Extended Quick Guide to Medicare

This guide was originally published by our partner, Triage Cancer, here.


Quick Guide to Health Insurance Options

This guide was originally published by our partner, Triage Cancer, here.


Financial Resources for Patients and Families

Financial Resources

How Can You Access Personalized Lung Cancer Treatment? Resource Guide

Download This Guide


Download This Guide

Triage Cancer’s Quick Guide to Health Insurance: Employer-Sponsored & Individual Plans


Triage Cancer’s Quick Guide to Health Insurance: Medicare

This guide was originally published by our partner, Triage Cancer, here.



Access To Healthcare As A Human Right

One of the keys to health literacy is understanding your role, as a patient, in the care delivery process chain: learning what you need to know to ask questions that can help clarify decisions with your clinical team; how to assess the information you’re given to understand what you need to do, or to consider, as next steps in your treatment journey; who to consult for expert input and guidance to fact-check, and gut-check, the information you’re processing and the decisions you’re making.

It’s a lot, particularly when you’re dealing with the impact of what I (and Firesign Theater) like to call “a really big disease.” It’s even more – way beyond “a lot” – if you have to also fight for the right to access treatment for your diagnosis.

This may seem like a problem that belongs to someone in a developing country, not one that happens in the USA, but that’s not the case, far too often. In America, a person given a diagnosis of cancer, or of Parkinson’s disease, or any other “really big” condition, not only has to navigate learning all about that condition, but also has to figure out how to pay for the treatment for it.

In a recent survey from West Health and Gallup, some alarming stats surfaced about Americans and access to medical care:

  • 45% of people surveyed feared bankruptcy if they had a major health event (“really big disease” or accident)
  • 77% feared that rising costs will significantly damage the U.S. economy
  • More than 3 million people borrowed more than $10,000 to cover medical expenses in the past year

Which brings me to my main point here – access to medical care is, I believe, a basic human right. If the system that’s providing your care has been priced out of your reach, and you wind up bankrupting yourself, and your family, to access care, is that really “care,” or a symptom of a broken system?

Sure, the doctors and nurses, as well as the hospitals and clinics where they work, deserve to be compensated for their work. I’m not suggesting that medical care be free. What I am suggesting is that, in the US at least, the goal of the “system” has been to protect the status quo – the revenue stream, which at last official count (2017, from the US Centers for Medicare and Medicaid Services) was $3.5 trillion, of which about $1 trillion is estimated to be waste. Does that sound like a healthcare system, or a RICO scheme? Asking for millions of friends.

Until we, as a nation, confront this issue of access to medical care, and the inequity of access caused by the “chaos behind a veil of secrecy” that marks the pricing of that access, we’ll be stuck in the loop we’ve been in since the end of WWII, when Harry Truman tried to initiate a national healthcare program and got beaten up on the White House lawn by Congress, and the American Medical Association.

America is founded on the idea that every person has a right to “life, liberty, and the pursuit of happiness.” It’s hard to have life, or liberty, or happiness without access to healthcare. Let’s live up to our founding principles, and guarantee healthcare access to all. Anything less, and we’re betraying the American promise.

Patient Assistance Programs (PAPs)

Patient Assistance Programs: A Guide for Patients

Cancer is costly. Each year, it costs $180 billion in health care expenses and loss of productivity, says the American Cancer Society. For individuals, it is the life-saving medications they need that can cost the most. According to, 90 percent of Americans say that cancer drugs are too expensive, and the prices have been steadily increasing for the last twenty years. Some cancer drugs debut on the market at a cost of more than $100,000 per patient per year, some for as much as $400,000. With this type of pricing, even insured patients can be facing out-of-pocket expenses in the tens of thousands.

When patients can’t afford their medications, it can lead to people taking them in lower doses or skipping them altogether, and that can lead to serious consequences, such as shortened survival times. High-cost medications can also lead to financial ruin for some patients. Chronic lymphocytic leukemia (CLL) patient James Miller, whose copay for his experimental and life-saving medication is “outrageously expensive” at $790 a month, says that, medications could eventually bankrupt people, especially if the medications are a patient’s only option for survival.

It’s literally a matter of life or death for patients like Miller to find funding solutions for their cancer drugs. Luckily for him, his medication is covered through the manufacturer’s Patient Assistance Program. Drug manufactures created Patient Assistant Programs, commonly known as PAPs, to provide qualifying patients with free or discounted medications.

While just about every manufacturer has an assistance program, one of the first manufacturers to offer a PAP was AstraZeneca. Company representative Colleen Kempf says, AstraZeneca began offering patient assistance over 40 years ago. The program now covers the company’s marketed medicines, and Kempf says, in the past ten years, the company has helped over 4 million patients with access to medications. “Our programs are driven by our corporate value in putting patients first. We believe that we have a role to play to support patients, and since 2005 have expressed this commitment in a very public way through our advertising.” Their PAP slogan, “If you can’t afford your medications, AstraZeneca may be able to help,” might be familiar to many as it is frequently heard at the end of its television adds and leads patients to its website which is where most PAP information can be found.

Find a PAP

The most important thing to know about PAPs is that they are available. They all vary a bit and have different names, but chances are, your drug’s manufacturer has one. AstraZeneca’s is called AZ&ME. Genentech, the manufacturer of the medication Miller takes for his CLL, calls its program Genentech Access. Celgene refers to its as Patient Support, and Takeda refers to its as Help at Hand.

Once you know assistance is available, it’s fairly easy to find it. All it takes is an online search of the name of the drug, coupled with the words “patient assistance program”, and you should be well on your way to the application process.

John Rosenguard, a multiple myeloma patient, learned about PAPs while doing research about insurance carriers. In addition, Celgene, the manufacturer of his medication, led him to its assistance program through an online risk management survey he was required to take when he was prescribed the medication.

There are also websites specifically designed to help patients find assistance. Non-profit website was formed in 1997 with the intent of helping patients navigate PAPs. Now a partner with Patient Empowerment Network (PEN), the vast NeedyMeds database of PAPs can be searched using the link below. All you have to do is enter the drug name to discover whether or not a PAP is available.



While it may seem like the best place to learn about PAPs is the internet, patients and drug companies both recommend you include talking to your healthcare provider about options. Miller learned about the Genentech PAP he uses through his doctor who put him in touch with a specialty pharmacy who provided him with a PAP application. Miller says he would not have known about the PAP on his own, but that without it he would “go broke”. He advises other patients to ask their treating physicians about options. “Any doctor prescribing an experimental drug like that will have a relationship with a specialty pharmacy,” he says.

Miller’s advice is good, but most people don’t seem to be following it, according to, which reports that only 27 percent of cancer patients, and less than half of oncologists, say that they have had cost-related discussions. But, nearly 66 percent of the patients say they want to talk to their doctors about costs. They should.

AstraZeneca’s Kempf says the company ensures that healthcare providers, patients, and patient groups are made aware of its AZ&ME assistance program. “As with any type of information or program, providers will have different levels of understanding regarding available PAP programs,” says Kempf. “The AZ&ME program works closely with healthcare provider offices on applications at their request and we’ve also seen some offices support their patients by assisting with the enrollment process for their patients.”

PAP Enrollment

Each company has a different process for enrolling in its PAP. Some applications require extensive financial information, while others require basic information; Some require doctors to fill out a portion of the application, while others only need a signed prescription. Miller says for the Genentech enrollment process, he had to provide his financial information and that the application had two or three pages for his doctor to fill out. Rosenguard says the Celgene application process was extremely simple and that it took about two weeks for him to be accepted into the program.

The best way to know what the enrollment process is for the manufacturer of your medication is to go to the company website. The websites are easy and straightforward for patients to navigate. For example, the Celgene Patient Support site has large buttons that say “Enroll now” and “Financial Help”. The words are in big, bold type, and each step is written in clear language. The site also provides a phone number, email, and fax information. There is an option to download the application form if you prefer to print it and fill it out by hand. The steps you will take are listed clearly, and what you need to include with the application is listed clearly. The process was easy and efficient, says Rosenguard.


Most applicants shouldn’t require any assistance beyond what the manufacturers can provide on their websites or by phone, but there are some businesses who will help patients complete the enrollment process for a fee. The prices vary, as does the quality of service.

PAP Qualification

Not all patients will qualify for assistance. While each program has its own qualifying criteria, and there may be different requirements for different medications produced by the same manufacturer, in general, to qualify for a PAP, a patient must:

  • Have very limited or no drug coverage from public or private sources
  • Must demonstrate a financial need based on a set income and assets
  • Provide proof of US residence or citizenship.

“The AZ&ME program is intended to serve patients most in need and has income eligibility criteria that speak to this design,” says Kempf. “The program primarily serves patients that have no insurance coverage or patients that face affordability challenges with their Medicare cost-sharing requirements.”

In addition, the amount of assistance a patient receives and the length of time each patient can stay on the program varies. AZ&ME patients without insurance are required to reenroll in the program annually, and Medicare patients are required to reenroll at the start of each calendar year.

“It is important for patients to understand the eligibility requirements as well as the documentation requirements that are typically associated with applications,” says Kempf. “Ensuring that the application is filled out, complete, and submitted with the required documents, helps ensure an easy enrollment process.”

PAP Basics

Once accepted into the program, both Miller and Rosenguard say that there is not much of a time commitment from them. They both receive their medication through a specialty pharmacy. Miller says his is delivered to his door each month, and Rosenguard says he is able to refill his prescription online, and also has a monthly follow up phone call with the pharmacy. In addition, Rosenguard is required to follow risk management guidelines to participate in the Celgene PAP. Guidelines, as specified by Celgene include, following safe sex practices, not donating blood, and monitoring cuts with blood loss.

AstraZeneca also uses a central pharmacy to dispense its medications to patients, says Kempf. “All medications are dispensed by a pharmacy and are sent directly to the patient’s home unless it is a medication that requires in-office administration by the physician. In office administration products are sent directly to the healthcare practitioner,” she says.

Are PAPs Worth It?

For patients struggling to pay for their medications PAPs may be the only option, and the pharmaceutical companies seem committed to providing the service. Kempf says that at AstraZeneca, they are always evaluating patient feedback to see how they can better serve patients, including streamlining the application process.

Rosenguard recommends the PAP programs. He says, co-pays, like his that were $200 a month per medication, can add up quickly. “The benefits were noticeable and met my needs to control costs over the long term,” says Rosenguard. “Plus, it educated me to help others (employees, support group members, friends) who might need this information in the future.”

How Medicare Covers Cancer in 2019

Cancer is a much more common disease than we’d like to believe. According to the National Cancer Institute, 38.4% of the people in the United States will be diagnosed with some kind of cancer during their lifetime – that’s 125,068,800 people out of our current population.

Some of the most prevalent forms of cancers among seniors are breast cancer, colon cancer, and lung cancer. Because aging can bring a higher risk factor for certain cancers, it’s important you know how well Medicare covers cancer. Fortunately, Medicare covers cancer quite well.

Common Cancer Treatments and Services

First, let’s talk about treatments and services that most cancer patients receive. This will help you to understand how specific procedures are covered under Medicare. Below is a short list of treatments, services, procedures, etc. that cancer patients may receive.

  • Chemotherapy
  • DME (durable medical equipment)
  • Hospice
  • In-patient hospital stays
  • Medications
  • Oncologist visits
  • Radiation
  • Skilled Nursing Facility (SNF) care
  • Surgery

It’s true that Medicare covers most treatments, procedures, and services needed for managing cancer, but you need to know more than that. You should learn how each service is covered and how much you’ll pay for it.

While it’s hard to know for sure how much you will pay down to the cent due to certain factors, you can at least get a ballpark estimate of what you can expect to spend.

Medicare Part A Coverage

In short, Medicare Part A covers your in-patient hospital stays. In addition, stays at an SNF and hospice care are also covered under Part A among a few other things.

This may not seem like much for an entire part of Medicare to cover; however, if you think about how expensive these services are, it’s easier to understand. Also, depending on how recently you have left the hospital, there are times that Part A could cover things like DME and home health care too.

Costs Under Part A

Like all other parts of Medicare, Part A has a deductible. However, you will soon learn the Medicare Part A deductible is unlike any other deductible in Medicare. Most deductibles are annual; however, Part A’s deductible is per benefit period.

What this means is that if you go to the hospital multiple times a year, you could experience multiple benefit periods, and that means you could pay the Part A deductible more than once a year. As of 2019, the Part A deductible is $1,364.

The $1,364 deductible pays for your first 60 days in the hospital. If you stay in the hospital for more than 60 days, you will owe a daily copay. The daily copay for Part A start at $341 and increases to $682 after day 90.

The deductible also covers your first 20 days in an SNF if your doctor sends you to one to finish out your recovery. If your SNF stay is longer than 20 days, you will pay a daily copay of $170.50.

All costs after 150 days in the hospital or 100 days in an SNF are your responsibility.

Medicare Part B Coverage

Medicare Part B covers your outpatient services, treatments, procedures, and then some. They even cover some things while you’re in the hospital. Things like chemotherapy, radiation, surgery, and oncologist visits are all examples of things that can be covered under Part B.

Costs Under Part B

Medicare Part B has a monthly premium that is based on your income. Most people pay $135.50 each month in 2019 for Part B. The annual deductible for Part B in 2019 is $185.

Once you have paid your deductible, Part B will cover 80% of the cost for Medicare-covered services and treatments, like the ones listed above. The other 20% of the cost is your responsibility. Sometimes you can incur Part B charges while you are in the hospital, such as when a physician performs an outpatient surgery or you are using a hospital facility to get a diagnostic imaging scan, which is covered under Part B.

Let’s look at an example. Joe goes to the hospital for a minimally invasive surgery. He stays in the hospital overnight for observation. He will pay his Part A deductible of $1,364, his Part B deductible of $185, and 20% of the cost for the surgery and any other Part B services provided to him while in the hospital.

Medicare Plans That Can Help

Just from that one surgery, Joe could be paying thousands of dollars out-of-pocket. However, if he had a Medicare plan, he could be better protected from having to empty out his wallet.

Medigap Plans

Medicare Supplement plans, also known as Medigap plans, help cover the patients from having to spend so much out-of-pocket. A Medigap plan could potentially eliminate all of the costs that Joe would normally have to cover himself.

A few Medigap plans that could help Joe immensely are Plan F, Plan G, and Plan N. Plan F would cover everything mentioned above, while Plan G would cover everything except the $185 Part B deductible.

Most people only get one opportunity to enroll in a Medigap plan with guaranteed approval. So, if you have been diagnosed with cancer before becoming eligible for Medicare, you should enroll in a Medigap plan during this one-time open enrollment window.

Medicare Advantage Plans

Because Medigap plans usually have a higher premium, some people elect a Medicare Advantage plan instead. As long as you have one or the other you will be able to have extra coverage.

Medicare Advantage plans provide extra coverage in a few ways such as providing additional benefits, offering lower copays, and including a maximum out-of-pocket. In 2019, the set maximum out-of-pocket spending limit is $6,700 for in-network services.

This means, even if you can’t afford a Medigap plan, you will at least be covered from spending more than $6,700 for in-network services in any given year.

It takes some research to decide whether a Medicare Advantage or Medigap plan is the right fit for you, so make sure you learn how each type of coverage works before you choose a plan.

Medicare Part D Coverage

Part D is the part of Medicare that is in charge of your drug coverage – well, most of it anyway. There are some cases in which Part B would cover your medications, but we will get into that in a little bit.

Costs Under Part D

Each Part D plan has a premium. Currently, the national average for Part D monthly premiums is $35. You also have an annual deductible included in your Part D drug plan. In 2019, the maximum deductible a plan can set is $415.

After you have met your deductible you will move into the second stage of your Part D plan called the initial coverage stage. During this stage, you will pay copays for drugs covered under your plan. The copay you pay for any given drug depends on the tier the plan has the drug classified as.

After you and the carrier together have spent $3,820, you will move into the coverage gap. During this stage, you will pay a specified percentage depending on what type of drug it is, brand-name or generic.

Once your out-of-pocket spending hits $5,100, you’ll move into the catastrophic coverage stage which is the stage you will remain in until January 1st. In the catastrophic coverage stage, you will pay no more than 5 percent of your drug costs.

Drugs Covered Under Part B

Medicare Part B covers medications that are administered to you in a medical office setting. For example, chemotherapy is administered to you, therefore, Part B covers it, not Part D.

Think of Part D as your drug coverage for prescriptions you pick up at the pharmacy yourself. However, even Part B covers some of those.

Better Safe Than Sorry

We hear all the time, unfortunately, of how someone didn’t get Medicare Part D when they were first eligible because they weren’t taking any medications at that time. Well later, come to find out, they have been diagnosed with cancer and now must wait until the fall election period to enroll in a Part D drug plan.

Since they waited, not only will they have a lifelong late penalty tacked onto their premium, they have to pay 100% out-of-pocket from their medications until they get enrolled in a plan.

The potential of being diagnosed with cancer is also a reason why you should enroll in a Medigap plan when you are first eligible. Like we mentioned earlier, if you wait until it’s too late, you will be denied coverage due to your diagnosis. It’s always better to be safe than sorry.


How to Pay for Long-term Care on a Fixed Budget

Long-term care costs are rising yearly, and with more people approaching age 65+ than ever before, the rates are not expected to fall. Not everyone plans ahead and unfortunately, we cannot know for certain when someone will begin to need long-term care, as it varies case by case. For the elderly population specifically, many individuals begin long-term care after a sudden life change that renders them incapable of caring for themselves, like a stroke or a fall. In the best-case scenario for a stroke or a fall, patients return home after successful rehabilitation. However, as unfortunate as it may be, many individuals are unable to return to their former health.

Sometimes, there is no sudden change and it is simply advanced age that is the main factor determining whether or not a person can safely remain independent. When someone does begin to need long-term care, depending upon the severity of the person’s situation, they are either taken care of by professional caregivers, family members, or moved into an institutional setting. Statistically speaking, about 80% of elderly people who need long-term care receive services within their own home or the home of a family member. The remaining 20% move into facilities, specially designed to accommodate a wide range of needs. Regardless of where we choose to spend our twilight years, there are costs involved. Below, I’ll outline some common ways people are able to fund their long-term care.

What Exactly is Long-term Care?

Long-term care simply refers to the type of assistance provided to people with cognitive or functional limitations to help them perform daily activities. If patients are unable to return safely home after a hospital stay, facilities continue rehabilitation to try and strengthen patients and improve their quality of life. The more a resident can do by himself or herself (eating, using the bathroom, bathing, and changing), the happier they generally are.

According to the Medicare Current Beneficiary Survey, the elderly population in nursing homes has declined over the past ten years. Through more advanced rehabilitation practices and increased availability to services, the majority of long-term care recipients are able to live with loved ones, in assisted living, or group homes if they do not need the intensive 24hour supervision that comes along with nursing home residence. Nevertheless, the question still remains: how to pay for the care you need.

Medicaid Long-term Care:

For many people, Medicaid is the best option when it comes time to pay for long-term care. If your loved one meets certain medical and financial requirements, or they are already receiving SSI benefits, they may be eligible. For most states, the monthly income limit is around $2,200 and the asset limit is $2,000. For Arizona specifically, the monthly income limit is $2,205. Anything beyond these values needs to be spent towards care or the applicant may be ineligible. The medical eligibility is stringent and the recipient can only live in Medicaid-approved homes or receive Medicaid-approved services in the community. Even with all of the requirements, this is still the best option for many families. For up-to-date Medicaid information, follow this link.

Long-term Care Insurance:

Although a person may have paid for medical insurance their whole life, medical insurance companies do not cover long-term care. There is, however, such a thing as long-term care insurance. There are different policies with different features, but generally, a person pays a monthly premium and when long-term care services are needed, the policy will pay out a certain amount, usually in the hundreds of thousands. Similar to life insurance, premiums are cheaper if the person buying insurance is young and healthy. Those already in need of long-term care services are not able to get coverage. Although these policies do not last forever, the payout is usually sufficient for the entire cost of care.

Sometimes, however, the care outlasts the insurance coverage. Don’t worry because many states have what is called a long-term care insurance partnership, useful when people spend through their policy and need to apply for Medicaid coverage. The partnership is a program between the state and private insurance companies. Partnership policies protect assets by reciprocating dollar for dollar what policyholders pay into their policies. For example, if you bought a Partnership Policy with a maximum benefit payout of $200,000, you are able to protect $200,000 of your assets. For married couples each spouse needs to purchase their own policy.

Once the original long-term care insurance coverage is exhausted, you may apply for Medicaid with the benefit pay out’s worth of assets exempted. This is extremely beneficial because again, most states have an asset limit of $2,000. In addition to the asset limit, Medicaid penalizes people who have given away or sold property below fair market value within the five years preceding the need for long-term care assistance.

Qualified Income Trust:

If an individual is over the financial limit for Medicaid long-term care coverage, some states allow applicants to spend down income towards medical care while others allow the creation of Qualified Income Trusts, also known as Miller Trusts. Miller Trusts place any income beyond the state’s limit into a trust, designating the state Medicaid program as the beneficiary once the long-term care recipient dies. The problem many people have with spend-down and Qualified Income Trusts is that for the most part, all assets and income eventually go towards care. Long-term care insurance, as described above, helps prevent the complete drain of assets for people who are hoping to leave behind a legacy.

Reverse Mortgage:

Another option that has gained popularity in recent years is the reverse mortgage. A reverse mortgage is not complicated, but may not be the best option for every situation. Essentially, a reverse mortgage is a loan borrowed against the equity of a home, but rather than making monthly payments, the bank reversely pays the borrower. As long as the borrower remains in the home they do not have to pay the bank.

If the borrower moves to a care facility or passes away, then the bank claims the property to pay off the amount given in the loan. This is a good option if the homeowner is healthy enough to remain at home, but requires some caregiving services. Also, this is for people who are not interested in leaving their home behind to loved ones. See here for a more detailed explanation of pros and cons.

Even with 80% of elders receiving “free” care through informal caretakers such as family members, the Congressional Budget Office estimates the value of this donated care at approximately $234 billion for 2011, the last year calculated.[1] This number is determined based on calculating forgone wages, time that could be spent employed elsewhere, transportation costs, and performing duties otherwise performed by paid healthcare aids.

For family caregivers it is especially important to reach out to a social worker for benefits you may not be aware of in your home state. If you are a family caretaker, your loved one may be eligible for respite care, a paid-for medical alert, home health services, or community based waivers paid for by Medicaid depending on financial and medical eligibility. Don’t wait until it is too late and start planning today.

[1] See page 2.


Facts About Medicare You Didn’t Know

If you or a loved one are approaching the 65-year-old mark, it’s time to get serious about Medicare. There are a lot of things to look forward to as you get older (and wiser), and Medicare can be one of them if you take the time to understand the program and how you can benefit from it.

Unfortunately, a lot of confusing misconceptions surround Medicare. This leaves people unsure of how to make the best choice for them. Luckily, we have all the best facts you didn’t know about Medicare from a licensed HealthMarkets agent who knows the program inside and out. Keep reading to make sure you have the right coverage when you reach Medicare years.

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Medicare is Not Free Insurance

The most common misunderstanding about Medicare is that it is free insurance sponsored by the government. Like all health insurance in the United States, you have to pay premiums for Medicare Part B, Medicare Advantage, and supplemental coverage. The good news is that the government secures costs for Medicare Part B based on your income. The standard premium for Part B in 2018 is $134 assuming your income is under $85,000 as a single taxpayer or $170,000 for joint returns.

If you receive social security benefits, this can help cover the costs of Medicare premiums. For those who opt for Medicare Parts C and D or any supplemental coverage, you have more freedom in the price depending on the plan you choose.

Medicare Will Not Cover All Treatment

Once again, like most traditional health insurance, Medicare will not 100% cover all health costs. Inpatient services involve a deductible over $1300, and you’ll need to pay a fee per day for any coverage in a facility for over 60 days. With Medicare Part B, you’ll need to still pay 20% of the Medicare-approved amount for care, and this is in addition to your annual deductible.

The best way to prepare for the costs of treatment is to do your research. If you know there are certain prescription drugs you’ll need or special doctors you’d prefer to visit, consider a Medicare Part C plan which gives you more freedom in coverage.

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There is a Deadline to Sign Up

The best time to sign up for Medicare is when you turn 65. This is called the Initial Enrollment Period, and it begins 3 months before you turn 65. It continues for another 3 months after your birthday. If you miss this initial period, you’ll face deadlines if you choose to join later. You’ll also be limited to enrolling during the specific open enrollment times during the year, which could lead to limited coverage.

There are a few exceptions to this rule. First, if you already receive social security benefits, you are automatically enrolled in Medicare on your 65th birthday. Also, if you’re still working and covered by your employer, there are different options. When in doubt, speak to an advisor at your local Social Security office for the specifics of your situation.

You Might Need Supplemental Coverage

Medicare is a great program, but there’s a list of things the program does not cover. Things like long-term care, hearing aids, dental care, or even eye exams are often not covered under Medicare. This is why many seniors opt for a Medigap policy to include extra coverage for these gaps in treatment. Talk to your doctor about what you’ll likely need coverage for in the upcoming years, and prepare yourself with the right additional policy, as needed.

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You Have Access to Preventative Care

While you’ll likely need to pay for treatment and complex health services, you receive a wide array of preventative care for free. It’s always a good idea to take advantage of these services to stay on top of your health as you age.

The most comprehensive option is the annual wellness visit which includes a personalized prevention plan. Every 5 years you’ll have access to a free cardiovascular screening, and annually you can get a flu shot and routine cancer screenings. The sooner you’re able to catch a potential problem, the less expensive and complicated it will be to treat.

It’s vital you take your health seriously as you age. It’s important to understand that while Medicare covers much of your health care, it does not cover everything. You’ll also need to follow the enrollment rules to take advantage of the program’s benefits. Knowing what Medicare is and is not will help you decide on the right coverage when it matters most.

The best way to prepare for the costs of treatment is to do your research. If you know there are certain prescription drugs you’ll need or special doctors you’d prefer to visit, consider a Medicare Part C plan which gives you more freedom in coverage

Health Insurance and Cancer: Your Mileage (and Coverage) May Vary

Financial toxicity is the phrase used to describe the impact of the cost of treatment on patients. The NIH describes financial toxicity as “problems a patient has related to the cost of treatment.” No matter what kind of health coverage plan you have, if you get a cancer diagnosis you’ll quickly discover all the things you’ll have to pay for, from co-pays on chemotherapy infusion drugs to the intricacies of “co-insurance,” where an insurer will pay a percentage, usually 70-80%, of the cost, with the patient responsible for the remaining percentage.

Financial toxicity isn’t limited to cancer – ask any person with diabetes who relies on insulin to stay alive about that – but the cost of cancer treatments is high, and rising higher. Cancer patients are put in the position of having to decide whether they’ll get the treatment their oncology team prescribes, or if they’ll put it off until they have the money for it. Patient assistance programs at pharmaceutical companies can offer some help, but there is no guarantee that a patient assistance program for a specific cancer drug will help everyone who can’t afford the drug.

An NPR piece covered this last year, framing the story around a man with advanced lung cancer whose oncologist prescribed a new drug, Alecensa, for his treatment. Alecensa’s annual list-price cost is $159,000, with Medicare patients like the man in the NPR piece paying $3,200 per calendar year. The patient in the story was prescribed the drug in late 2016, but decided to forego filling the prescription until January 2017, to avoid having to pay $6,400 within 60 days for the treatment.

This is part of a pattern of cost shifting across the health payment landscape. Premiums for private insurance rose 170% from 1999 to 2011, far higher than the average increase in wages in the same time frame. Prescription co-pays also rose dramatically with the introduction of tiered drug coverage plans that passed more cost to the patient. For example, from 2000 to 2012, the proportion of individuals with a drug plan that had three tiers increased from 27% to 63%.

Exacerbating the immediate financial anxiety of negotiating for a treatment that could mean the difference between life and death, there’s the impact of medical bills on a patient’s long-term financial health. A Consumer Financial Protection Bureau report in 2014 revealed that almost 20% of credit reports had medical debt reported on them. In 2016, the Commonweath Fund noted that, “As of late 2016, 28 percent of U.S. adults ages 19 to 64 who were insured all year were underinsured — or an estimated 41 million people. […] Half (52%) of underinsured adults reported problems with medical bills or debt and more than two of five (45%) reported not getting needed care because of cost.”

I’ll put a face on this issue by introducing you to a friend of mine, Linnea Olson, who has been successfully beating Stage IV lung cancer for over a decade. Linnea has insurance coverage under COBRA, which is costly, but helps keep her alive by covering the costs of treatment that aren’t covered by the clinical trials she’s been part of over the years. She recently got a notice that her insurance had been terminated – the story on that is here, on her blog – which put her in the “high anxiety” zone, to say the least. That post is a very clear example of how financial toxicity impacts someone with cancer. Her situation lit fires across the cancer patient activist community, launching a campaign to get her coverage back. Four days later, she received word that her coverage had been reinstated. She shared that news publicly on her blog, too.

My point here is that this should not be way Americans are expected to deal with a cancer diagnosis – by facing the fight of their life while their financial lives are laid waste. The costs of treatment shouldn’t be the first thing someone has to think of when facing a life-threatening illness. The patient community is in sync on that. The oncology clinical community agrees that treatment costs, and financial toxicity, are in need of clearer discussion. The American Society of Clinical Oncology published a report in 2017 that included a recommendation that discussion of treatment cost and coverage “would […] facilitate rational discussions of efforts to use more cost-efficient regimens, use less expensive alternatives, or perhaps forego extremely expensive and toxic options that have little chance to provide meaningful benefit.”

I recommend that we keep advocating for more transparency in insurance coverage, and in the in-clinic discussion of the costs and benefits of cancer treatments. It also couldn’t hurt to advocate that our elected representatives craft legislation that makes that transparency a requirement, not an option.

Financial Empowerment for Cancer Patients

The Kaiser Center reports that one-third of Americans aged 18-64 years are put into debt because of cancer. The debt is caused as a direct or indirect result of high medical costs, an inability to work and loss of income. More than half of those incurred debts of at least $10,000. The risk of debt or bankruptcy is further exacerbated among younger patients and those with lower incomes. The National Cancer Institute estimates that there are 454.8 new cancer cases per 100,000 men and women each year. Now, more than ever, financial preparedness is a key strategy to battle the disease. Financial healthcare empowerment is going to play a significant role in the fight against cancer. If survival rates are going to improve, it is imperative that everyone is prepared from day one to deal with a shocking news that will affect all fronts of your life from physical and mental to psychological and financial implications.

Preparing for the High Cost of Care

Healthcare, in general, is a costly affair especially if you don’t have a good insurance. In this regard, it is important to squirrel money away even if it is only a small amount. If you are not familiar with the 50-30-20 (regular expenses, wants and savings) rule, you might need to think about it and adopt this strategy to maximize savings that you could put away. Even simple lifestyle changes (strict budgeting and ditching credit cards) already bring you a step closer towards financial independence.

Coping with Financial Stress

Unfortunately, while you are steadily creating your personal wealth, the devastating news of cancer can quickly knock you a few notches down. Resiliency to financial stress is key in getting through the illness. This means smarter management of assets and finding ways to get help for your treatments.Seeking the services of a financial counselor or social worker upon diagnosis is imperative to check out what resources are available to you.

Better Cancer Treatment Options but Rising Healthcare Costs

The good news is that treatment options for cancer are getting better as the years passed. The bad news is that these therapies are pricey and are likely to eat up the budgets of cancer patients. Although it might be difficult to come to terms with your diagnosis, it is important that you start researching treatment options immediately. Your healthcare insurance might not be enough to pay for treatment.

Dealing with Healthcare Finances, Loss of Income and Even Bankruptcy

There are several state and federal programs that offer financial support to individuals and families. Known as entitlements, they are directed at low-income groups, the elderly and disabled persons. Pharmaceutical patient assistance programs also exist to help with reimbursements, referrals for co-pay relief programs and discounted/free medications. You can also participate in paid clinical trials to help defray costs of treatments. Cancer organizations and general organizations can support treatment plans for patients.

Cancer is a devastating disease that has serious financial repercussions. It can cause physical and emotional stress as treatments and therapies can literally cost a fortune that in turn may in debt you or at worse, lead to bankruptcy. Being prepared financially for any disaster can mitigate these negative effects and taking charge of money matters is empowering.